March 19, 2014

March

Madeleine and I are in Jacksonville again for our week of chemo. This two weeks off, one week on, schedule is exhausting. She had scans today, and we got good results. The tumor in her chest shrank by approximately 20% (I don't have the report yet, so this is an estimate), and the node that was in her lung has disappeared completely, yeah! Also, her knees were never imaged, but we're pretty sure that she had disease again there, and the way that she is walking, dancing, skipping, running...we're pretty sure that is gone as well. Excellent news!

Two strange things did show up on the scans. The first is that there is fluid build-up in her left lung. This happened after her initial relapse too, and it eventually had to be drained. Her breath sounds are fine and she is having no problems with shortness of breath or anything like that. We'll get a chest x-ray tomorrow for a closer look, but it's probably something to just watch for now. The second thing is that there appears to be a fluid filled cyst in her stomach. It was present on the last set of scans but just barely, so it is growing. Our doctor said it looked benign on the scans, so again it is something to watch for now.

Madeleine is having no pain - we've stopped all the pain meds and removed the fentanyl patch that she was on previously. Her energy is great, her appetite is awesome, and she is really happy. She is a different kid. We haven't seen her looking and feeling this good in a long time. I'm so happy that she is doing so well.

The chemo drugs that she is on are not really expected to be curative. They may work for some time, and then the tumor will adjust and they will stop working. We are going to meet (yet another) neuroblastoma specialist in Atlanta so that we can put together a solid plan b for when (if) these drugs stop working.

Things looked so bad a few weeks ago, and we are so happy that she has
responded well to these drugs and that she is able to have this time.